Mission Viejo second-grader Gianna DeLorenzo, pictured in her home in this October 2009 photo, has frequent seizures because of a genetic disease called tuberous sclerosis complex.

Mission Viejo parent Pat DeLorenzo, right, addresses the state Board of Registered Nursing during its meeting Wednesday in Costa Mesa. His wife, Aina, holds a copy of an Orange County Register story about their daughter, Gianna, who has frequent seizures that can be stopped by the anti-convulsion drug Diastat.

Parents and epilespy advocates line up behind a podium at the state Board of Registered Nursing's meeting Wednesday in Costa Mesa to express their support for a Senate bill that would explicitly permit nonlicensed school personnel to administer the anti-convulsion drug Diastat to students in an emergency.

The state Board of Registered Nursing meets in a conference room at the Hilton hotel in Costa Mesa on Wednesday. The board meets seven times annually, rotating its meeting location each time to cities all across California.

Local parents of students prone to epileptic seizures hang signs on chairs at the state Board of Registered Nursing's meeting Wednesday in Costa Mesa.

COSTA MESA – The state nursing board voted Wednesday to oppose a Senate bill that would give school workers clear authority to administer an anti-seizure medication to students in an emergency.

The 7-1 vote by the state Board of Registered Nursing was the culmination of more than an hour of emotional, tear-filled testimony from local parents who support the bill and the nursing union leaders who oppose it.

“It’s not about anyone’s job or personal opinions,” nursing board member Katherine Ware said during the board’s meeting at the Hilton hotel in Costa Mesa. “It’s about protection of the public, and that’s what we keep paramount in our decision-making.”

Senate Bill 1051, authored by state Sen. Bob Huff, R-Diamond Bar, is an effort to counter a directive issued last year by the state nursing board that urged school nurses statewide not to train laypeople to administer the anti-convulsion medication Diastat. The bill is working its way through the Senate committee process.

The board voted 7-1, with Richard Rice dissenting and Erin Niemela absent, to oppose the Diastat bill, effectively siding with the nursing unions and their allies.

It is unclear what impact, if any, the board’s opposition to the bill will have on its chances of passage.

The proposed legislation has already cleared its first two major legislative hurdles – passing the Senate’s education and health committees on April 14 and May 6, respectively – and is headed to the Senate appropriations committee on Monday. If it doesn’t hit any roadblocks, advocates say it could become law as early as August.

“Without the Diastat, there’s no question my daughter would not be alive today,” parent Norene Gill of Orange told the nursing board, which met in a conference room at Costa Mesa Hilton hotel.

“She is delayed to the point of a 1-year-old,” Gill said of her 10 year-old daughter, Sierra, who had her first seizure at 10 months old. “… She is an absolute joy to have, and I really think you should reconsider your position.”

SAFETY AT STAKE

Medical experts and epilepsy advocates say that prohibiting non-licensed school staff from administering Diastat – the brand name for diazepam rectal gel – is dangerous because of the time it can take for paramedics to arrive on scene. In a worst-case scenario, a seizure that is not stopped in a timely manner with Diastat could cause permanent brain injury or even death, potentially in a matter of minutes.

“The people who invented (Diastat) made it so easy for anyone to use it,” said parent Naldo Cabanillas of Costa Mesa, whose 21-year-old daughter is in a wheelchair because of a seizure in infancy.

“The prolonged seizure left her severely disabled,” Cabanillas said, choking up as he fought back tears, his daughter Bryn by his side. “I’m here to talk for her because she cannot do it for herself. …If I had that device with me, she wouldn’t be here today. If I had it with me, I could have used it that night.”

Nursing unions and their allies say students prone to seizures must be treated by licensed medical personnel. The medication, which is administered rectally, could be given mistakenly to a convulsing student who does not need it, or by a layperson who panics under pressure and delivers the wrong medication, the bill’s opponents say.

“This is where policy-making is the roughest,” said Kelly Green, a regulatory policy specialist for the California Nurses Association union. “The bigger solution is to make sure schools have the sufficient personnel to take care of this situation. This bill is clearly not going in that direction.”

O.C. EDUCATORS AT FOREFRONT

The Orange County Department of Education has been at the forefront of efforts to get the bill passed. Orange County’s 27 school districts had a combined 249 nurses for nearly 600 schools last year, according to state data.

“By supporting SB 1051, the BRN will be protecting children with epilepsy,” county Department of Education attorney Ronald Wenkart told the board. “It is that simple.”

But Nancy Spradling, executive director of the California School Nurses Organization, a professional association, told the nursing board the Diastat bill was “so poorly written” and urged board members to oppose it.

“There is going to be minimal training and absolutely no supervision,” Spradling said. “To help the person with seizures, you must be able to tell difference between cluster and ordinary seizures. You must know how to and for how long to monitor students after administering Diastat. … The directions say to call a doctor if you are unsure about using it. How many unlicensed people in a school are going to be able to do that?”

The board’s decision Wednesday to oppose the Diastat bill is consistent with a legal opinion issued by its attorney in March. The six-page opinion says that state law does not permit unlicensed school employees to administer Diastat, nor does it allow nurses to train laypeople to give the medication.

“Diastat is a medication, and its administration constitutes the practice of nursing,” attorney Don Chang wrote in the March 15 opinion. “… Such conduct may subject the nurse to discipline for aiding and abetting the unlicensed practice of nursing.”

The Diastat bill would reverse this stance, permitting school workers to administer the drug.

School workers already are explicitly allowed under state law to administer the injectable drugs epinephrine and glucagon, used to treat severe allergies and diabetes, respectively.

But a similar bill seeking to extend these rights to the injectable drug insulin – used to treat diabetes – died in the state Assembly’s business and professions committee April 20, after it failed to muster enough votes.

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